[RubyV]

Hi everyone,
I'm RubyV. On August 28th I received a concussion after what seamed like a minor wakeboarding accident. I didn't even think anything was wrong with me besides a minor headache until later that night when I passed out. My doctor diagnosed me with a concussion and ordered a CT scan which came back clean. I was taken off work for a week and scheduled a follow up.

I had terrible headaches and noise and light sensitivity. I spent all day every day in bed in the dark and silence. I couldn't even put the dishes away because the sound of the glasses clinking would give me a terrible migraine. After two weeks my doctor diagnosed me with PCS and told me it would take time to get better. The noise and light sensitivity improved, although it still bothers me. The headaches improved in the sense that I'm not in pain 24hrs a day 7 days a week, however I wake up with a headache every day and go to bed with one every night.

A month after my injury I passed out again and my doctor referred me to a neurologist. He ordered an MRI which came back clean and put me on a new med, Gabapentin. I asked him what the normal recovery time was, what he usually sees with his patients, what I should expect for recovery and his response was "Oh it will be months before you notice an improvement, just relax. You need to learn to be patient and relax". After going home and doing some research I am extremely frustrated to realize that there is no standard recovery time. Why didn't my neurologist tell me this?!?!

I am just now beginning to realize what a diagnosis of PCS means. I don't think my family or coworkers realize what it means either (I work in a hospital, high stress and lots of noise) which makes it more frustrating. My fiance has been very supportive and I am so lucky to have him to lean on. Lately I have been living day to day. I am a full time student and just started back at work part time, and it feels like after just a week back everything is starting to catch up to me. I slept 10 hours last night with a 2 hour nap the day before and I was hardly able to get out of bed today. I felt like I had been up for days and my head was throbbing. I am thankful that I am as high functioning as I am, but I also want to be able to talk to people that understand what I am going through when I say "Today is a bad day". I am just looking to connect with people that are going through the same things I am, someone who can say to me, "You're not crazy, you're not a wimp, you're not making it up, I know what you are living with".

Anyways, that's me. Sorry for rambling on. Hope everyone is feeling well and happy today.

[nightnurse30]

Welcome to our support group. You will find every answer, suggestion, support, and encouragement by this great group of PCS sufferers. I am 5 months post TBI and now PCS. I tried after 14 weeks to go back to work in the hospital and first month wasnt too awful, but this past month it caught up to me so bad that im sleeping 17 hours at a time, constant headaches, complete and utter exhaustion and dizziness that sends me to the ground multiple times a day. I was just placed back on disability again for 3 months. Sadly, the true way to heal is to rest. cognitive and physical rest. trying to push through this is going to prolong your recovery. But everyone is different and you need to listen to your body. If your pain is constant.....pain is a signal to your body to let you know their is an imbalance somewhere. Wishing you the best. You are very very early on in your recovery and will most likely discover all types of odd symptoms and feel weird about them. Just vent about them here and we will all validate that its normal for PCS and you arent crazy (we all ask if we are going crazy at one point or another.) haha
Best of luck to you!!!

[RubyV]

Thank you nightnurse. I have no idea how you were able to go back to work. I really feel for you. Up until a few months ago I worked 12hr nights full time in L&D. I can't imagine doing that now. I hope you start seeing an improvement soon. The last few days I have felt extreme fatigue. I know I need to cut back on something, but I'm afraid to. I need my job for my insurance and to pay the bills; and I just went back to school full time, I really don't want to put school on hold again.
Thank you for your response. It feels so great to connect with someone else who knows what this is like.

[nightnurse30]

Originally Posted by RubyV

Thank you nightnurse. I have no idea how you were able to go back to work. I really feel for you. Up until a few months ago I worked 12hr nights full time in L&D. I can't imagine doing that now. I hope you start seeing an improvement soon. The last few days I have felt extreme fatigue. I know I need to cut back on something, but I'm afraid to. I need my job for my insurance and to pay the bills; and I just went back to school full time, I really don't want to put school on hold again.
Thank you for your response. It feels so great to connect with someone else who knows what this is like.

Best advice i can give is .... Listen to your body. If you are extremely fatigued, it means you need to rest. And yes, your social life will definetly suffer. Mine has quite a bit. I saved all my energy for getting through work and on my off days i was pretty much on the couch. Didnt work out at all the 2 months i was working....no energy left for it. I would say prioritize what you need to get done each week and leave the non-essential stuff for your fiance to do like cleaning, cooking, etc. It takes a lot of energy out of you to do these simple daily things so just try to make your life as easy as you can. Good luck with the studying and good luck at work. Try hard to rest and take it easy!

[Eowyn]

I pushed through at work for the first week I was injured (I teach high school). And then I ended up flat on my back for six months with insane headaches. So I would also urge you to take time to get a lot of good rest as soon as possible.

I'm now 9 months post-concussion and working part days in a one-to-one setting (instead of whole-group). But it has been a long and frustrating recovery.

Good luck!

[tamisue]

Ruby-every single medical professional I've talked to gave me the exact same response-It just takes time. No one know how long it is...and it sucks.

I'm three months out of a TBI/PCS and still going one day at a time. Hang in there. You aren't alone.

Tami

[Mark in Idaho]

RubyV,

You need to check with the California State Employment Development Department. You pay SDI (State Disability Insurance) out of your paycheck. It should pay some sort of wage while you heal. The web site is http://www.edd.ca.gov/disability/

btw, What symptom did your neurologist say the gabapentin was for? I have been on it for 10 years. It helps me with seizures.

My best to you.

[RubyV]

Thank you for all of the support and advice tamisue, eowyn, nightnurse, and mark. Everyone has been so welcoming here.

Mark, My neurologist prescribed the Gabapentin for my headaches. It is supposed to help with nerve pain. It is also prescribed to people that are experiencing nerve pain with Shingles. How do you like it? Do you have any side effects with it? I have noticed an improvement with my headaches, however I am beginning to notice that I have felt more sad and depressed. That's not me, I am usually a very upbeat and positive person. I am considering weaning off of it. I would rather have a bad headache then be sad and weepy all day long.

[musiclover]

Welcome, you have come to a great place! This is truly a one day at a time process and it is nice to know that we are not alone